Stephanie's story

21 April 2017

Having a baby is one of the most exciting times a woman can have in her lifetime. I was no exception to this, and from the moment I found out I was pregnant I couldn’t wait to become a mum. I had such big expectations, just like any other new mum has. When I went into spontaneous labour at 24 weeks and 5 days, and gave birth just hours later, my world came crashing down around me. Suddenly all of those dreams and expectations were ripped away from me. The excitement, anticipation and joy of becoming a mother turned to guilt, anger, fear and grief.

My labour was fast. So fast I had little time to register what was actually happening. Looking back now the short experience feels like a surreal blur. I remember hearing the words 'preterm labour', the look of horror on the midwife’s face, and wailing at the medical team around me as I was delivering Harry, asking if my baby was going to die. As soon as Harry was born, weighing a tiny 870g, he was whisked away in his incubator and suddenly the pain and noise was gone. I lay in the quiet feeling completely lost and empty.

The consultant neonatologist on shift that night came to see my partner and I shortly after to let us know Harry was stable, but in for a rough ride. We were given some hair-raising statistics about his possible outcomes and told that if he did make it home, we shouldn’t expect it to be any time before his due date, which was four months away.

That first night after the birth was bleak. I had a spinal block to remove my placenta and so I wasn’t able to go over to the neonatal intensive care unit (NICU) to see him. I didn’t know if Harry would live or die, and I was battling the darkest of thoughts. I was convinced if he did survive he would be severely disabled. A son that would never walk, talk or even be able to go to the toilet himself. What quality of life would he have? And it pains me admitting that initially I thought it might be for the best if he did die. I didn’t want to see him because I was frightened that if I did I would fall in love with him and it would just make losing him even harder.

The next morning I was fit enough to walk about again. I had no more excuses, I had to go and see my son. Nothing can prepare you for that first trip to NICU. I walked in completely overwhelmed by the lights and bleeping machines around me. It was like a spaceship.

A nurse pointed over to a plastic box. That was my baby over there. I felt sick, I peered in at this tiny, red, twitching little creature that they said belonged to me. There were wires coming in and out of his skin. There was dried blood on the little hat pulled down over his eyes, that hadn’t even opened yet. And a plastic tube cascaded from his mouth that was keeping him alive. I’m not sure what it is I felt upon first laying eyes on him. But powerless is a good way to begin describing it. I just began to sob.

Then came the immense feelings of guilt and grief. I had such an uncomplicated pregnancy and I absolutely adored carrying a child. It broke my heart that so abruptly my bump was gone. I never even reached my third trimester or really got to see and feel my baby kick inside me. I did everything by the book when pregnant. So why had my body failed us?

I tortured myself with "what ifs". Did I work too much? Did I have the shower on too hot? I had drank three cups of tea that day - I once read you should only drink two? The most ridiculous thoughts ran through my head. How could I have done this to my partner? He was so excited to become a dad. He had joked how his son would be a pilot or a footballer, and suddenly I felt like the son I gave him may never even learn to talk.

For similar reasons, I also found it really difficult to be around our families at first. This was the first grandchild on both sides, and not only had my body broken my expectations, it had broken theirs too. What did I do so wrong? Family members would say, "He’ll be running round this time next year!" and, "Oh I saw a boy in the paper born earlier than Harry, he’s fine now". These well-meaning comments did, and still do, make me cringe. Nobody knows the outcome for my baby. I just wanted to wake up from this nightmare. Each time Harry had a painful procedure, or looked distressed, it felt like a stab in my chest. What had I done to him?

Over the coming weeks, I can’t say these feelings went away, but I learned to live with them. I adjusted to life on NICU. My partner and I spent every day there. I began expressing milk for Harry, and weirdly this sort of gave me a focus and became a distraction from the rollercoaster little Harry was on. Weeks turned into months, and being on NICU became our 'norm'.

Our NICU journey lasted 16 weeks and Harry made it home five days after his due date. He didn’t have it easy by any stretch of the imagination. He had small bleeds on the brain, sepsis, meningitis, ten blood transfusions and a whole host of other procedures. But considering his gestation, believe it or not, it was considered relatively smooth.

As I watched my tiny fighter grow stronger, learn to breathe, learn to feed and have cuddles, we began to bond with each other, because regardless of how we met, we will always be mother and son.

Today Harry is 21 weeks old. He has chronic lung disease as a result of his prematurity and is on home oxygen, just until his lungs grow stronger. He is pretty vulnerable to respiratory infections and these can result in hospital stays, so we are very careful that he isn’t exposed to crowded places or children where he is more likely to pick up bugs. That aside, he is a healthy, happy baby.

Every day I pinch myself that we got so lucky. I am filled with awe at every breath he takes. Of course, for the majority the effects of extreme prematurity are life-long and only time will tell us how severely it has affected Harry. But I do know that he is the bravest, strongest boy I know, and he will take any challenges in his stride, just as he always has.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages